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Lupron and Nubeqa (darolutamide): Anyone on this protocol?

Posted by mmacaulay @mmacaulay, Apr 4, 2023

I have advanced PC with metastasis in the lymph nodes and pelvis. Gleason 6-9 and PSA>20. Began with 3-month Lupron injection. Began Darolutamide (Nubeqa) at start of Docetaxel chemo. Six infusion sessions, three weeks apart. Due to start 26 sessions of radiation.

Current PSA and testosterone way down. PET scan results promising.

Finding Nubeqa is extremely expensive, even after Medicare and supplement. Wondering how long I might take it. Looking for experience by other users of same drug in similar overall treatment protocol.

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melcanada | @melcanada | Apr 5, 2023

After radiation 40 sets I did plus 23 yrs later L2 zapped get on BOTH Zolodex and Enzalutamide early when still castrate SENSITIVE

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joeroy | @joeroy | Apr 6, 2023

Re: Nubeqa cost. The manufacturer has an assistance program to remove the financial barrier. Typically, they will mention it during the refill phone calls. Do you receive those calls? If not, my recommendation is to call their support number and ask about the program for financial support. I hope this helps.

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mmacaulay | @mmacaulay | Feb 26 6:40pm

My experience very similar. Rated stage 4B. Chemo therapy followed by 26 radiation sessions. Simultaneously on Lupron injections and Nubeqa. Three-monthly PET scans have shown success. Very weak but hanging in there.

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wooldridgec | @wooldridgec | Jul 25 1:01pm

Nubeqa is the best ARSI. It is so good and so powerful Bayer is announcing their new research results. I have been on Nubeqa for 2 years now. It does not break the blood barrier to the brain so you do not get added brain fog. The hot flashes can be horrible. My insurance covers it at 100%. My understanding is that Nubeqa is also totally covered under medicare. I'm 62 July 27 so I have 3 years before needing to switch to Medicare. Hopefully the cost comes down by then.

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1 reply
lisab2 | @lisab2 | Jul 26 7:22am

Regarding prescription drug costs for those on Medicare: In 2022 Congress passed the Inflation Reduction Act, which included measures to reduce prescription drug costs. The law went into effect January 1, 2023. Some aspects have already been implemented. In 2025, two more go into effect:
--People with Medicare prescription drug coverage will begin to have their annual out-of-pocket prescription drug costs capped at $2,000.
--You will also have the option to spread the costs of prescription drugs over the calendar year, rather than paying up front when you fill a prescription.

The same law allows the federal government to negotiate with pharmaceutical companies to lower prescription drug costs.

Here's a link to the Medicare website for more details on the law and impact on prescription drug costs.
https://www.medicare.gov/about-us/prescription-drug-law

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mmacaulay | @mmacaulay | Jul 27 9:47pm
In reply to @wooldridgec "Nubeqa is the best ARSI. It is so good and so powerful Bayer is announcing their..." + (show)
@wooldridgec

Nubeqa is the best ARSI. It is so good and so powerful Bayer is announcing their new research results. I have been on Nubeqa for 2 years now. It does not break the blood barrier to the brain so you do not get added brain fog. The hot flashes can be horrible. My insurance covers it at 100%. My understanding is that Nubeqa is also totally covered under medicare. I'm 62 July 27 so I have 3 years before needing to switch to Medicare. Hopefully the cost comes down by then.

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I was diagnosed stage 4b group 5 in 0ctober 2022. Ten age 72. PSA of 25. Started Lupron injections. Chemo followed with six sessions of Docetaxel while starting Nubeqa. Then 24 sessions of radiation (photon). PET scans every 3 months. Encouraging results. Current PSA negligible. Stopped Lupron after 13 months. Testosterone steadily increasing. Continuing Nubeqa.

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